Table 2.
Initiation of standardized multiprofessional treatment and care and information of disease specific resources in 369 individuals with a confirmed diagnosis in TRANSLATE NAMSE
| Executed n (%) |
Not appropriate for condition/not necessary* n (%) |
Missing data n (%) |
|
|---|---|---|---|
| Standardized multiprofessionel treatment and care (CPW checklist item 24) | |||
| Referral to further treatment and care | 345 (93.5) | 0 (0.0) | 24 (6.5) |
| Information diagnosis | 346 (93.8) | 10 (2.7) | 13 (3.5) |
| Information diet/nutrition | 47 (12.7) | 308 (83.5) | 14 (3.8) |
| Training for monitoring | 215 (58.3) | 142 (38.5) | 12 (3.3) |
| Information about medication | 217 (58.8) | 137 (37.1) | 15 (4.1) |
| Education for behavioural measures | 242 (65.6) | 112 (30.4) | 15 (4.1) |
| Psychological counselling | 144 (39.0) | 212 (57.5) | 13 (3.5) |
| Social-legal counselling | 100 (27.1) | 254 (68.8) | 15 (4.1) |
| Genetic counselling | 92 (24.9) | 262 (71.0) | 15 (4.1) |
| Delivery emergency pass | 50 (13.6) | 301 (81.6) | 18 (4.9) |
| Information about disease specific resources (CPW checklist items 26–29) | |||
| Information about research projects | 130 (35.2) | 226 (61.2) | 13 (3.5) |
| Information about patient registry | 150 (40.7) | 204 (55.3) | 15 (4.1) |
| Information about patient advocacy group | 134 (36.3) | 219 (59.3) | 16 (4.3) |
| Information about Alliance for Chronic Rare Diseases | 242 (65.6) | 104 (28.2) | 23 (6.2) |
*Items may not be appropriate for specific conditions (e.g. emergency pass), individuals may have been already informed or do not wish specific information (e.g. about participation in a registry)